It is no small thing that parents who have lost their child to cancer #StepUp with no benefit to themselves, other than perhaps the desire to fulfill their child's wish that no other child should have to suffer as they do.
Parents have flown in from all over the country to DC to advocate for the #STARact to improve funding, access to trials and compassionate use when other options have failed - which they do regularly.
As often as I am with cancer families, it still gets me - the colossal loss, the suffering, the impact it has. I was in a puddle of tears twice yesterday.
First puddle; I was in line for lunch, lamenting how chemo has altered my chemistry to the point of new food allergies (all dairy and eggs), making it difficult to eat much of what was available. Also, a buffet lunch is difficult when one hand is busy with a cane and the other is holding a plate, leaving you wanting a third hand for placing food on your plate.
Meanwhile, I began talking with a woman and her daughter in line behind me. Looking at my leg (and cane) they accurately guessed osteosarcoma as the beast who took the bones in my leg. I asked how she knew that. Her son, she explained, had osteosarcoma too.
"Oh! How is he doing? Did he come with you to DC? Limb salvage or amputation?" By now her daughter joined us and the conversation. "Limb salvage" was the answer and "no" he is not with us in DC. He passed away eight months ago.
I lost it. Completely. Ugly cry. Hugged her tight and long and hard, and she hugged me back - an intensity of knowing.
My 'losing' it was a three-part cry-fest: 1. shame in my disdain for my own survivorship issues; 2. utter sadness at the loss of this woman's beloved son; and, just for fun, let's add 3. survivor's guilt.
A silent self-check, a re-dressing of gratitude, and utter determination to Make It Better for these families came back into very clear focus. As well as a deep admiration for this woman for flying across the country at her expense to make it better for kids and families still fighting. Amazing.
The second puddle of tears for the day came at a reception on Capitol Hill (interestingly in the former Naval War Room and HQ of the Un-American Activities Committee) where I met a man from California. He lost his little girl to Neuroblastoma. He told me of her valiant battle, and how no more treatment options were available for her, and so she passed away. He is fulfilling his daughter's wish to help Make It Better so no more kids have to suffer and die. Amazing generosity on every possible level. Amazing. Truly.
I feel so humbled and grateful to be able to do this work. Thank you for reading this, and most of all, thank you for helping me Make It Better for kids with Cancer. Truly, I am blessed with this day, and hope you know how blessed you are for your day, too.
Thank you to the teams of Senator Patrick Leahy, Senator Bernie Sanders and Representative Peter Welch for spending time with me on The Hill yesterday.
You know when you get your favorite flavor of ice cream, on the perfectly crunchy cone, maybe even sprinkles to make it better? There is nothing as lovely and delightful as that first bite, lick or mouthful, is there? Yet, as the licks go on, one gets distracted. While still eating the same delicious, ice cream cone, the mind wanders from that initial space of sweet escape. Before you know it, you only have a few bites left. When you realize the short time you have left with your delicious cone, you go back to savoring, appreciating and tasting every last bite, until it is gone.
So it is with life, love and anything of real value. So it is with cancer. You pull together these ingredients and create a delicious life - a partner, a career, maybe have a family, a home, a pet. It is bliss. You can get distracted until a moment of loss pops up and you look at your delicious cone/life and find your cone-your bliss - is almost gone. This is when you start to appreciate and savor every moment.
I love ice cream and I love my life. I have gotten a pretty sweet cone - 48 years so far. I used to complain about getting older - about my 2nd scoop of life, and the pain and wrinkles it was piling on. Until I was diagnosed with a pediatric bone cancer (osteosarcoma) at age 43.
During my time as a 43 year old pediatric cancer center patient, I was very aware that I was surrounded by kids whose greatest wish was to get to their next birthday. Their cone was a kiddie one and it was almost gone. They hardly got to get to the savoring part.
I know two things for sure; to savor the good things in life, you must be present - not get distracted by nonsense. The other thing I know is that kids should not be dying of cancer, particularly because of lack of funding for research.
We need to do better. All pediatric cancers are considered rare, and receive less than 4% of the NIH budget for cancer research. With seven children dying every day of cancer, it's not rare enough. The ones who survive the treatment face amputation, infertility and serious health problems due to harsh, grown up chemotherapies. Cancer families and friends are holding bake sales and shaving their heads to fund research for new treatments. We do it because we know kids deserve better treatments - ones that are less harsh and that work. Kids with cancer deserve a second scoop.
In two weeks, I and other pediatric cancer activists will be in Washington DC talking with our state representatives about Making It Better for all pediatric cancers through funding research. Over the last few years, I have asked for your support in signing petitions and appealing to your senators for this cause. Thank you for doing it :).
May I ask that you continue to show your support and appreciation for organizations that step up and provide platforms, events, partnerships and funding for pediatric cancer? This is a way we can expand awareness, influence lawmakers, increase funding, and God willing get to better treatments and a cure. National LightNet is one such company - they have jumped into the ring with MIB Agents and are all-in for fixing this disparity. Click HERE to see other companies that have offered meaningful support of our missions at our Seattle MIB Event. We are grateful for these companies and individuals for seeing the problem and offering to be a part of the solution. If you know of other organizations that support pediatric cancer causes, tell us so we can share and give them meaningful support back.
In the meantime, I hope you savor every bite of your life. May you have three scoops and live a long, delicious life. Oh, and May the 4th be with you.
Google describes Moonshot Thinking as "Thought leaders who live in the grey area between audacious technology and pure science fiction." President Obama, has appointed, nay, charged Vice President Biden with the #Moonshot program to get cancer cured in our time. This undertaking is akin to President Kennedy asking that a man be landed on the moon, thus the term Moonshot. I would go so far as to say that, as Google defines Moonshot above, so I dare to define the "pure science fiction" part of the above as the equivalent of finding a cure. Yet, it is within our reach, isn't it? Like the man on the moon, hot pockets and self-driving cars. It is possible.
If we, as a community of researchers, clinicians and survivors could all put our intellectual properties, experiences and findings into a big, collaborative pie, we could save ourselves and our families - and the biggest win of all, our kids with cancer. If we could take a clue from the technology sector, who are pioneers in Open Source Coding, we could do this. By making coding and web-based platforms open source, everyone has access. Elon Musk of Tesla has opened it's files and patents to all comers. This is not a threat to Tesla as an organization, on the contrary, it has made Tesla the go-to leader as a source of innovation for creating a better car for people and their environment. He has said, "We believe that applying open source philosophy to our patents will strengthen, rather than diminish Tesla's position." Can you image what this thinking would have on cancer research, treatments and a cure?
What if we began operating as a symphony - as opposed to individual instruments? What if our island chain of research, experience and expertise came together as a nation of dedicated individuals to cure cancer and reduce suffering? I hope that Moonshot is just that powerful. As a caregiver when my husband had cancer, a cancer patient myself, and a witness to far too much suffering in and out of the pediatric cancer center. I want a seat at that table. I want to make it better. Put me in coach. Let's defeat this opponent and stop it forever.
Here is my letter to Vice President Biden:
Dear Mr. Vice President,
My sincerest condolences to your family on the tremendous loss of Beau. He will be remembered.
Moonshot is an important and noble cause. At age 43 my marathoner husband was 2 years post-treatment for tonsillar cancer and I was training for a half marathon, when I experienced pain in my knee. It turned out to be osteosarcoma, a rare pediatric primary bone cancer. Age notwithstanding, my treatment was in the Pediatric Cancer Center at Memorial Sloan Kettering in NYC, as my disease is a pediatric one. For nearly a year, I was treated with kids who had cancers that took limbs and lives away from them and their families.
Less than 4% of the nation's cancer budget is spent on all childhood cancers. There have been no new drugs for pediatric cancers in over 20 years. Yet, when you cure cancer in a child you give them an average of 72 years of their lives back. Collaboration between clinicians, researchers and patients is essential. The Tech Sector has shown us that open source research and best practices have made for rapidly improving and accessible internet and devices. I am a member of an online patient collaboration group for osteosarcoma. We have made each other's lives significantly better in treatment and in loss through open-sourcing our treatments and experiences.
My organization, M.I.B. Agents (www.mibagents.org), based in VT, undertakes the mission to Make It Better for kids with cancer by pairing a child in treatment with a child who survived their same cancer. The surviving child writes a letter of hope and support to the child in treatment. Additionally, we create experiences for children and young adults who have been "sent home" when treatment options have been exhausted. The goal is that the child LIVES their final days, and the surviving family has happy memories of their last times together. (VT Standard - http://bit.ly/2091OFQ)
Still, as you well know, it is not enough. Not by a lot. Even if a child survived their cancer, they may not survive the adult treatments they are given. Infertility, heart, liver, kidney, bladder, hearing and decreased cognitive function will be ongoing troubles for the child lucky enough to survive.
There is much to be done. This experience of having a childhood cancer as an adult, gratitude for the courage shown me by my fellow pediatric patients, as well as a healthy dose of survivor's guilt compel me to need to fix this, to make it better. Will you please pull up a chair for me and pediatric cancer patients at the Moonshot Table? I am in on this fight!
With Hope and Kindest Regards,
Dobby, from the Harry Potter books, was a principled, yet interfering house elf for the nefarious Malfoy Family. He was an indentured servant, until the gift of an old sock from Harry freed him. Dobby is ugly, painfully so. He is raggedy, with a poverty of sophistication and a lack of filter that, while somewhat refreshing is also uncomfortable. For me, Dobby is a metaphor for cancer; meddlesome, a harbinger and ultimately, a saving grace.
Cancer is like having Dobby, the House Elf from Harry Potter as your companion in consciousness on the crossing. Kind of a modern-day Jiminy Cricket, he is up in your ‘house’, as it were – for the duration – making a mess of things organized, then ultimately freeing you from it. The moments of clarity brought to me courtesy of Dobby my Cancer Elf are much appreciated. Because of cancer, I learned things that you only know for sure when you survive in spite of the odds. Here is what Dobby the Cancer Elf taught me;
1. Kindness Matters. When you have a bald head, your ride is a wheelchair and you carry an emesis basin instead of a purse, people are kind. During treatment, I was waging a battle that was visible and obvious. What I am aware of now, more than ever, is that everyone is fighting some type of battle, even when you can’t see it. Be kind to everyone. It matters. Dobby is bald, wears an old pillowcase and is hard to look at. He needed kindness.
2. Appreciate those who are there for you. Release from your heart and mind those who aren’t there for you. Unexpected kindness for our family came from friends and unexpected people. Ernie removed a fallen tree from our yard, and stacked wood. David took the trash to the curb and did home repairs. Christie dropped a cooler filled with frozen meals at our doorstep each week. Sandy ran a marathon and prayed the rosary for me while she raced. Vanessa stayed with our daughters - a lot - and at a moment’s notice when we had to get to the hospital. Linda stayed too, and cooked, and sat with me. People I didn’t know prayed, sent cards and gifts and just showed up. “Close” members of my family and some friends didn’t. Not even a card. It was painful and I felt abandoned by them. In retrospect, for whatever reason, they never really were there for me. Looking back, I had made excuses for them throughout my life, but the truth of these relationships came to bear in my darkest hour. It was painful then, but liberating now. To focus on the lack of concern by a few is to dishonor those who showed up in small and sacred ways and cared for my family and I. Dobby didn't have much, but he got a sock from Harry, the sock set him free. He set about moving forward in being positive, not looking back at the Malfoys.
3. Have faith. When you are seriously ill, there are times you are so completely alone and scared. For me, these were times when my husband couldn’t ‘come in’ with me. In those moments, the absence of those you thought would be there, looms large. When I would go into an MRI tube or wake in recovery or surgery, the feeling of solitude is a giant echo in a cold, dark, vastness. It was those times that I asked the Holy Spirit to be with me, and I felt peace. The truest peace I have ever felt. God is with you. Just ask Him to be. Dobby had faith that all would be well one day. He was right.
4. Don’t waste time on anything. Don’t waste your time on anyone that doesn’t deserve it. In the words of the prolific ‘Unknown’, “Don’t cross oceans for someone who wouldn’t jump a puddle for you.” If you don’t know what to do with your time, share it with someone who needs it. It will be well spent. Dobby focused on helping Harry while his life was crap, he wasted no time in trying to get the Malfoys to like him.
5. You are not your hair. When you are fighting cancer, you really don’t have time, energy, vanity or use for hair. To lose it seems a big deal at first, mostly because it represents loss, the first in a series of losses as it turns out. You are not your hair, car, house, bank account or occupation. Dobby's lack of anything lovely didn't stop him from being who he wished to be. He set about helping Harry in spite of his looks, lack of power or a place to call his own.
6. Err on the side of love, always. No one wants to be ‘left alone’ to deal with cancer. If you are not sure if you are inner-circle enough for a call or a visit, write an email, send a message on Facebook or put a little something in the mail. Anything to let the person know they are being thought of, prayed for, loved. When you are unsure of your steps, err on the side of love, always. Even if all you have to give is a sock, it could mean the world to some one.
7. Pray. It works. ‘Nuff said. Dobby had faith.
8. Love your body. It is the greatest, most magnificent and priceless thing you will ever own. As much time as I spent cursing my thighs pre-cancer, I was sorry to see my femur go (and my natural knee and tibia), my leg bones have been replaced by titanium now. As remarkable as limb salvage surgery is, and as brilliant a surgeon as I had, nothing can replace the function, beauty and grace of your natural parts. My body fought hard when some cells turned on me and went rogue, and my body persevered. When this gift of a vessel for my soul stops fighting for me, I shall look upon it with gratitude for its service. I'll try to do it in the meantime too. Just like Dobby, who soldiers on in service to others even with a lack of height, muscles or beauty.
9. Let Go of ‘Supposed to Be.’ Embarking on a journey you didn’t buy a ticket for, and not really being guaranteed where you will end up is the walk of every cancer patient. It is a voyage of discovery and uncertainty. Just let go of your expectations of where your life is supposed to go. Roll with what you got. Just like Dobby.
10. Growing old is a privilege. A privilege denied many, who would have loved to live another day. Celebrate with a grateful and joyful heart each birthday, each wrinkle and gray hair; they are evidence that you have survived every challenge faced. You never know what tomorrow will bring you - for Dobby, it was freedom.
J.K. Rowling is quoted as saying, “Rock bottom became the solid foundation on which I rebuilt my life.” I can’t help but think that she had a Dobby with her on her journey through her poverty and depression.
My wish for you is that you not meet your rock bottom. Rock Bottom is a harrowing, lonely place to be - but a great place to be from. To slog back toward the sunlight is to know a courage that only comes from overcoming what you once thought impossible.
As my family and I were dashing in to church at the last possible moment before mass began that Sunday, our friend and pastor Fr. John Yonkovig met us in the back of church spoke these words to me, "If you are going to worry, don't pray. If you are going to pray, don't worry." This phrase came across as somewhat trite under the circumstances. Just having received news that months of chemo did not have the desired "shock and awe" affect, and still in a wheelchair post limb salvage surgery (where my femur, knee and tibia were replaced with titanium), I guess I was expecting a simple "I'll be praying for you."
Under these, and most conditions, I was comfortable in both prayer and worry, as co-existing entities. Worry and prayer are besties, aren't they? As evidence, I present the Church Ladies - the most pew-side prayerful people I can think of. The Church Ladies spend (seemingly) hours on their knees in prayer, seemingly consumed with worry. The worry makes the prayer seem more fervent somehow.
Still mental muddling the pre-mass comment, I took my seat with my family, in the last pew in the back of the church. Here, I could arrive and depart almost undetected. No one's sorrowful stares to answer back to, less physical (and infectious) contact and no worries about my scarf going askew, revealing my very bald head. This location also meant we were close to the "noisy cricket" children's section.
This particular Sunday was no exception. The noisy crickets were humming along through mass, driving matchbox cars along the cliffs of the missal holder, and coloring pictures of Jesus telling stories to children. Post communion, the matchbox driver had fallen asleep in his father's arms. The child's head was resting heavily on his Dad's shoulder, and he was out cold. Peace throughout the land. I could pray in relative quiet now, with my new focus on not worrying.
Then it hit me. The planets aligned. To pray without worry means to give yourself over to your Father. The child in front of me gave himself over to his dad. He did not sleep in his father's arms worrying that he may be dropped. He trusted his dad with his safety, comfort and care. That is what I am supposed to be doing. "Amen, I say to you, unless you become like little children, you will never enter the kingdom of heaven." -Matthew 18:3. To worry would be akin to asking a trusted friend or family member to do something really important, then worrying that they weren't up to the task, didn't hear you, or just dismissed your request out of hand.
If you trust Him, then trust Him. Don't worry. Pray for your intention, do your part, and let go. Just let go. Will your prayer be answered? Yes. Will it be answered exactly as you want it to be? No. It's God the Father, not God the Genie. Bummer news, I know. But trust that your father does what is best for you, and if you are going to worry, don't pray, if you are going to pray, don't worry. Thank you Fr. John Yonkovig. I am working on it still.
Well this is a heavy topic, so much so, that these newly typed words already seem weary under the weight of the title looming above. Well, let's dive in, shall we?
The days after being diagnosed with a rare pediatric bone cancer in 2010 at age 43 are wobbly in every sense, surreal even. I was back home in Upstate NY from MSKCC in NYC, in order to prepare for my first treatment. I was in my normal, but nothing was actually normal. Calls to friends and family contained frightening, sad news and tears - not the usual sarcastic banter about The Bachelor, the rude waiter we encountered or school activities of the kids.
One of the normal things I found myself doing, was driving to work - to my job that I loved doing with people I loved being with. On this particular day, I was driving there to clean out my office, as I would not be returning for a while. Or, was I returning? I was feeling pretty low. As I drove the quiet, wind-y road, I came upon a completely stopped car ahead of me. As I cautiously rolled closer toward it, I could see that a large tree had fallen on the car windshield, crushing the hood, shattering the glass, ultimately and obviously, killing the driver. The tree had fallen at the precise moment, in the exact position across the car, for maximum damage. Once I fully realized the facts of the scene, an ambulance siren approached from behind me.
My first thought was, "what if I had left my house two minutes earlier?" That could have been me. Maybe I was the better candidate for a tree-falling-on-a car accident, after all I had cancer. My prevailing thought, however, was probably the mentally healthier one. I held on to this thought, this revelation, as my year of many surgeries, loss of a normal leg, painful treatments, debilitating nausea & vomiting and worst of all, the loss of the kids around me to cancer, unfolded. The thought was simply "I GET to fight." I get to go to battle. If I don't beat this cancer, I will get the chance to say goodbye, forgive me, I forgive you, I love you. The gentleman in the car in front of me didn't get to do any of these things. His family got a phone call - that's it. As grievous as my diagnosis was, Stage 3 High Grade Osteosarcoma of the Left Proximal Tibia, I was still here, still able to drive my car, hug my kids, kiss my husband, say I love you, forgive me, I forgive you, goodbye. I get to fight. I get to try.
Fight, hope, pray, love, forgive, get forgiven and vomit I did. A lot. Of all of it. What else happened a lot, too much for one human to endure, was the death of so many children to cancer. Statistically, seven children each day die of cancer. I was 43 years old - they were 10, 4, 8, 17, 12....so many children dying, while I slogged through barely tolerating the treatments, but alive. In a way, of course they were dying - no new treatments for pediatric cancers in TWENTY YEARS. Less than FOUR percent of the Federal Budget is allocated for Pediatric Cancer -ALL PEDIATRIC CANCERS! Parents of seriously ill children are holding bake sales and fundraisers to fund much needed research for treatments their child will not even have the benefit of. Seriously.
So why did I leave two minutes later on that day, why did I survive when so many little ones didn't (and don't)? Survivor's guilt? Yep. What to do with it? Be grateful, love the gift of my life today, love the best person I will ever know - my husband, the best people I know - my family, and even that cranky lady next to me in Pilates class. Keep fighting. Don't leave a man (or child in this case) behind on the field of battle. Create awareness. Fund research. Find a cure. MAKE IT BETTER.
Thus M.I.B.(Make It Better) Agents was born, out of survivors guilt, a desperate need to make it better, to shout from the tallest mountain WE NEED A CURE!!! We GET to fight. WHO IS WITH ME?
Why is it that kids with cancer relate so closely to superheroes? Well, they certainly have some things in common...
1. Superheroes begin as ordinary.
We all have this in common. A clean, ordinary beginning (even if born on another planet, far far away). Wether rich or poor, we come with the same basic equipment. Mere mortals are we.
2. Superheroes are compelled to action in circumstances of injustice.
There is something that rises inside of all of us at certain injustices - abuse, neglect, prejudice, oppression, the things that makes our soul cry. For kids with cancer, it must be the simple injustice that there is no cure and you got this cancer for no good reason - you didn't smoke too much, work in a coal mine or drink yourself silly. By the way, it must be fought with 20+ year old drugs. The only way through, with any hope of returning to health is to endure it.
3. Superheroes have a base of operations, away from the public eye.
Though it is not generally a Bat Cave or Secret Lab, the base of operations to fight the nefarious evil-doer that is cancer, is the hospital. The hospital is the mother ship that must be returned to for months, even years, on end. At some point during treatment, there is the realization that the real base of operations lies within. That is where the campaign is truly waged.
4. Superheroes have a secret identity, designed to protect those they love most, be it thier sidekick, Lois Lane or Mom.
The kryptonite of every cancer patient is the despair that they see in those caring for them. Knowing many pediatric patients, they feel a sense of responsibility for their caretaker's happiness -they smile when they are sad, suppress justifiable screams of pain and find joy where there is little to be found. Superheroes dig deep for the strength to endure with grace.
5. Superheroes face an evil counterpart, villain or circumstance.
For just about anyone facing a health battle, it is an odd thing to reconcile that the enemy is unseen within your physical self. Your body is your own, and for all it's real and imagined flaws, a part of it has turned on you. Why is it waging a war upon itself? It must be stopped!
6. When the odds are against Superheroes, they fight anyway.
Wether they live or die on their journey, Superheroes and pediatric cancer patients prevail in the undertaking of it - with valor, honor and love.
I am sure that adult cancer patients also share some of these Superhero traits, but for the most part, they refrain from the use of superhero metaphors. And capes.
Yesterday I answered a question from the mother with a newly diagnosed son, "What do I tell my 11 year-old about having surgery before chemo to install a portacath?" For the happily uninitiated, a "port" is a pin cushion (of sorts) installed under the skin, just below the collarbone. It has a tube that is inserted into the jugular vein, allowing quick delivery directly into the bloodstream. In most pediatric cancers, the type and dose of chemo drugs are so harsh that to simply run an IV line in an arm, would break down the skin and veins of the patient. My answer was more to the son than the mother, and slightly more earnest than I intended; "This is the first step in becoming a cancer-slaying warrior! You must be battle-ready with the weapons that will help infiltrate the enemy! The port allows the allies (veins in arms) to be unharmed. This is the most direct path to the battlefield." The superhero journey has begun.
As an adult who had been diagnosed with cancer in 2010 (and has thus far survived-thank you Jesus), I had, at 43 years old - at a minimum - out-lived 100% of the battles I had faced. An 11 year old has not. Their frame of reference is quite different than ours. For most 11 year-olds, the only epic battle that is on the level of cancer, are those that have been seen in comic books or movies. The young cancer patient is fearful, but undaunted - they know that ultimately, Spiderman lives, Batman prevails, and Prince Charming slays the dragon. Kids with cancer know the rules of superheroes. They know fear, but accept the mission anyway. Perhaps because they know not of failure.
It has been a while since I have written, in spite of stories swirling in my head and inspiration abounding. Particularly with my work with MIB (Make It Better) Agents, which I started in January. Our mission is to MIB for pediatric cancer patients by:
The EllenTube #JustKeepDancing OsteoPeeps video does not show enough of the suffering that goes on. One of the kids in the video just relapsed after being declared a NERD (No Evidence of Recurring Disease), one lost her hair just after the video was shot, one's leg was just amputated from the hip joint, another - passed away shortly after treatment began. The video doesn't tell those stories well enough. It also doesn't tell the story of the sidekicks, friends, siblings and parents whose invisible capes are sacred symbols of selfless love and sacrifice in the service to another person.
So, dear superheroes of pediatric cancer, I stand in awe of you. I hereby promise to write more and do more to bring about awareness, research and a cure for what ails you. I ask the good people of Metropolis, "WHO IS WITH ME?".
P.S. The answer to "Why do pediatric cancer patients relate so closely with Superheroes?" is simple. They ARE Superheroes.
___________ *___________ * ___________ *___________ *___________ * ___________
M.I.B. (Make It Better) Agents
M.I.B. (Make It Better) Agents